‘When I Swim, I’m Free’: How Marathon Ocean Swims Help Me Cope With MS

Ten years after Susan Simmons was diagnosed with the incurable autoimmune disease, she took her health into her own hands. She began cold water swimming, and now she swims to inspire others.

Susan Simmons treading water in a cold lake, smiling at the camera.

Susan Simmons ready to swim in the cold ocean around the Great Bear Rainforest. She swims wearing only her hot pink swimsuit, without a wetsuit for protection from the cold. (Photo: Corey Teramura)

I begin all my ocean swims the exact same way: I slowly lower myself into the cold water, I focus on my breath and I try not to think about how cold it is. Instead, I concentrate on the beauty of my surroundings. And that’s easy to do when I swim in the waters surrounding the Great Bear Rainforest.

The Great Bear Rainforest is a 400-kilometre-long stretch of temperate rainforest on British Columbia’s central and north coast. It’s part of the largest intact coastal temperate rainforest on the planet. It takes more than a day to get to its biggest community, Bella Bella, from my hometown of Victoria on Vancouver Island, but I’ve returned to swim in these waters every summer since 2016. This summer, I swam 33 kilometres here, and if you add up my distance over the last four summers, I’ve swam more than 100 kilometres in the ocean around the Great Bear Rainforest. The Heiltsuk First Nations people laugh when they say I’m the first person they know of who has swam this far in these cold waters on purpose.

When I swim in the ocean, I’m free. I buzz with an energy I don’t feel when I’m on land. I’m at peace with myself and only aware of my surroundings, my movement and my breath. Swimming in the wild, cold ocean isn’t easy, but I’m not one to take an easy path.

I’m an ultramarathon swimmer. I swim in oceans and lakes, in water temperatures ranging from 7°C to 17°C—that’s at least 10°C colder than a swimming pool. I swim wearing only my hot pink swimsuit, without a wetsuit to constrict my movement. I don’t like to have a thick barrier between my body and the water. But there’s nothing buoyant helping me swim or protecting me from the cold temperatures.

I also live with multiple sclerosis, an incurable autoimmune disease. Basically, that means my own body attacks my nervous system.

I was diagnosed with MS 24 years ago, when I was 30. At the time, my doctor told me not to exercise and to just go home. He said there was nothing he could do for me. It was like he told me to wait for death. I felt disposable, hopeless and forgotten.

Cold water swimming has given me a sense of purpose. It taught me that I am not disposable. It taught me anything is possible with patience, even swimming hundreds of kilometres while living with an incurable autoimmune disease.

Susan Simmons swimming in a cold lake.
When Susan Simmons was diagnosed with multiple sclerosis 24 years ago, her doctor told her not to exercise and to just go home. She felt disposable and forgotten. Marathon ocean swimming has given her a sense of purpose. (Photo: Corey Teramura)

I’d trained all year to swim this 33-kilometre stretch of ocean in the Great Bear Rainforest. I was physically ready, mentally in the zone and my support crew was by my side. I never swim in open water alone and I have a crew of six people who help me. There are two kayakers, friends of mine from Victoria, paddling on either side of me. They guide me in the right direction and make sure I eat and drink every 30 minutes so I have the energy to swim for nine hours straight. There are two motorized boats, with a local First Nations pilot onboard to navigate the route and a couple others that are local to this area and knowledgeable of the wildlife, the currents, the tide changes and the proper emergency response protocol. They are constantly monitoring me for signs of exhaustion and hypothermia. And my partner, Ray, is there on the motorized boat too. He’s ready to encourage me when things get tough.

We started early in the morning, my crew floating a few metres away while I stood on the barnacle-covered rocks near the shore, ready to begin. The water was just as I remembered: crisp, clear and I could taste its sweetness. Mountains surrounded me. Eagles flew overhead, schools of fish swam past in the crystal water and a thick forest of spruce and cedar trees lay behind me. Life was everywhere. The world felt peaceful.

That feeling didn’t last. About five hours into my swim, I crossed into the glacial-fed Burke Channel. The currents are sometimes so strong that boats won’t cross. I felt the water temperature drop and the currents pick up. It was a three-kilometre crossing, but it took me double my usual time to swim each kilometre. I inched across, slowly, stroke by stroke, repeatedly pushed back by strong waves. Yet even as I struggled, I remembered why I began swimming in cold water years ago.

After my MS diagnosis, I basically gave myself permission to give up. And for the next 10 years, my health deteriorated. I didn’t exercise and I gained a lot of weight. I had frequent MS attacks: my legs would go numb, I’d have difficulty walking and I couldn’t balance. My MS progressed to the point where I had trouble even walking around the block. One day, I took a look at myself and realized that if I didn’t make a change, I’d be in a wheelchair by the time I was 50. That scared me into taking control of my health. I decided to do something.

(Photo: Corey Teramura)

For me, as for many people with MS, heat triggers flare-ups. So one hot summer day, about 14 years ago, I decided to exercise in the pool. The cool water was soothing and stopped me from overheating. But I struggled—I napped for hours after just a few lengths.

As I kept swimming, my fitness improved and my MS attacks became less frequent. I found that immersing myself fully in cold water reduced my symptoms and the severity of the attacks. Even my mental health improved from the cold water dips. While my current doctor hasn’t exactly prescribed exercise or cold water immersion, he’s seen how both benefit my health. As I began to feel healthier, I set myself new goals to keep myself moving. A few laps turned into a dozen. A short swim turned into an hours-long workout. A pool session turned into a 35-kilometre lake crossing. Then that became a double crossing. Then, I ran out of lake.

So I began swimming in the ocean. I wanted to swim in colder water, explore the wild ocean around my home on Vancouver Island and learn about the natural environment in this part of Canada—and why it’s worth protecting. For me, it’s not about raising money. Rather, it’s about raising awareness and encouraging action. I’d heard friends talk about oil tankers passing through these waters and I wanted to learn why they opposed that. I wanted to teach others what I’d learned swimming in this part of the world and encourage them to explore these waters too. The environment in this remote part of British Columbia is like no other place I’ve visited. It’s wild and temperamental, with forceful currents and strong channels that one can only struggle through.

As I swam this summer, I knew I might encounter whales. My route went directly through an area locals call “Humpback Alley.” I was ready, but I didn’t see anything. Yet on the second day of my swim, my crew noticed a pod of humpback whales had gathered together and were swimming in a circle, creating an enormous whirlpool to trap fish at the water surface to eat. After the day’s swim, my support crew told me that this had all happened within seven meters of where I was swimming.

I remember feeling a wave of emotion hit me as I completed my swim, finally walking onto the beach after swimming 17 hours over two days. I was exhausted. I was emotionally drained, thinking of what oil tanker traffic could do this immaculate natural area and the wildlife that call it home. And I was exhilarated, happy to have challenged my body, pushing my limits and feeling the cold, untamed water directly on my skin.

There is no cure for MS. But I plan to keep swimming in wild, cold waters as long as I can and for as long as I can keep my symptoms at bay. I have no plans to slow down—I’m already planning where I will swim when I return here next summer.

While I turned to swimming to manage my MS symptoms, I’ve since discovered that swimming isn’t just for my own physical and mental health. Now, I speak publicly about my swims and the environmental lessons I’ve learned. I coach new open water swimmers, preparing them to swim in wild waters too. I swim to encourage others who feel forgotten or disposable or inadequate, as I did. I swim to show them what I’ve achieved while living with MS and that they too can be brave enough to enter cold, unknown waters. I swim to inspire others to achieve something great, whether it’s making efforts toward conservation, trying something new or even swimming beside a pod of whales.

This was Susan Simmons’s fourth summer swimming in the ocean around the Great Bear Rainforest. She plans to return to the Great Bear Rainforest in the summer of 2020 to swim another 30-kilometre stretch, from Koeye to the Hakai Institute on Calvert Island. This month, she will attempt another channel crossing. Depending on the winds and weather, she will try to swim across the Strait of Georgia, the 32-kilometre-long channel between the Lower Mainland and Vancouver Island, the week of August 25 to 30. For more information about Susan and her swims, visit her websites: greatbearswim.com and susansimmons.ca.

Susan Simmons swimming, close up on her feet hitting the water.
“Swimming in the wild, cold ocean isn’t easy, but I’m not one to take an easy path.” (Photo: Corey Teramura)